BPD diagnosis being used by hospital to deny treatment.

Ok i guess.

I hope your good

Thanks ivana. This thread is not as old as I would like.

Early on I discussed with her whether I should film her and she became so agitated that I had to respect her privacy,

This is a general problem - whenever she is well she has little memory of anything that happened, she thinks the hospital was lovely to her, She says she's never going to hospital again (until next time). I tried to explain to her that the hospital kept her unstabilised for six months and her mother fixed her in two weeks, but she became so upset I had to stop, I am a terrible bastard who is trying to make her sick by talking to her about things she wants to forget.

The hospital has struck her off their list as she hasn't turned up for meetings for five weeks.

Same old thing. She's still very young. One day she will have to come to terms with the fact she's a werewolf, or pretty close to it - maybe this type of complaint is where the legend came from.

HI joeflood, sorry to hear about the distressing time your daughter has been having, and your own frustration and anguish in trying to get help for her. I guess using a term like 'werewolf' reflects how upset and angry you are at the illness, but it can be hurtful to others who come to the forums hoping for understanding and support.

Does she have an actual diagnosis of BPD? It's still used by some people unfortunately as a 'dustbin' description for troubling symptoms that don't fit a neat diagnosis, implying incorrectly that it's a hopeless situation with no hope of recovery. If she does have this diagnosis, are you in Victoria, as you mention St Kilda? There's a statewide service called Spectrum which has a very good reputation for helping people (and yes, using talking therapies), and some good private clincicians too who specialise in the area.

The hardest thing is separating out one's own emotional frustration about what's happening to a loved one, from recognising behaviour as being due to the effects of an illness, and trying to take a cool approach to helping her find the best treatment and support she can. God knows that's not easy, especially in the early stages - we've all been there - but please hang in there, and hopefully she'll find the right clinician who can help.

Hi Ivana, thanks for the thoughtful comments.

It is for sure an odd case, a perfectly normal affectionate confident girl with a loving family that suffers from periodic attacks where she has no conscious mind and is completely dissociated, and that come and go rapidly. But not unique – I get the impression that the British lady who came forward early in the thread has something similar.

I’m now pretty clear about it having seen it from start to finish a number of times. When fully activated she has a series of rolling panic attacks, which are so horrendous that her conscious mind runs away, cocoons itself and hides. She is left with an ‘animal brain’ that just wants to run and seek help and will run through anything to do it. There is no memory, just as we have no memory of what happens when we sleep. If you try to make her remember, it brings back the raw panic. It’s not embarrassment, it is pungent fear (I have noticed that when she is in that state it can be smelled quite clearly).

I have seen encephalitis survivors, they have problems with their day to day memories from brain damage. D’s conscious mind is undamaged because she has found a way to completely shield it.

The Australian doctors had not a clue how to deal with it, everything they did made it worse or put her in danger, and they kept her ill for a full six months. However one US doctor nailed it and told her mother what to do – make sure she is in a safe place, not constrained, and talk her through the panic attacks. Eventually the real D will come out and take a look, scuttle away and if nothing bad happens, come back a couple of days later for good. This is a very intensive treatment involving someone she trusts being on the case 24-7 for up to a fortnight – but it surely works, I have seen it.

What the Australian hospital did was almost the exact opposite – pretend she was doing it to seek attention, ignore her panic attacks, place her in quite a hostile unsypathetic situation because she wasn't a doped up compliant zombie like the rest, throw her out into a highly unsafe environment - including St Kilda at 2am without shelter, and the jails.

The only thing that is surprising is that more damage wasn’t done, but I guess her cocoon really works. Her only memory now is she was caught up and drowning in something like a giant tidal wave for a very long time, and she was finally washed up somewhere. She's been and done a carpentry and furniture course, gone off special benefit, and I presume she must be working, havent seen her in a week.

[Edited 27/09/17]

Although it is now 2017 and I haven't finished reading to the end I feel compelled to offer a bit of my story in support of joeflood & their daughter. I met a wonderful woman 8yrs ago when I myself was very low after having helped fight the family court system in NSW trying to protect 3 young girls from sexual abuse from their natural father. Another long & tragic story. Nevertheless things turned out badly due to the corruption/nepotism & I ended up losing my new family, my home of 12yrs and was essentially destitute.

After a year or more alone I finally met this lady from WA online & we seemed to get along right off the bat. Time went by and eventually I was invited to go and visit her in WA to meet in person.

I should mention at this point that we had both completed degrees in psychology and she had a good job with the government but she now only worked part time.

From the moment I met her I knew something was not quite 'normal' but I wasn't looking for a regular boring relationship so I ignored it. After two days there we became intensely intimate for want of a better term and then after I got up to get a drink/snack, I returned to find her sobbing & engaging in self harm which I had never witnessed before. She was embarrassed and distressed but I told her it was ok and held her for some time.

Eventually she shed some light on her behaviour and explained she had been seeing a psychiatrist for ten years or so and that apart from her mother having recently committing suicide her older brother had abused her from about the age of six.

Far too many details to relate here but needless to say I only got to hear about 2% of what she would eventually tell me about thirty years of abuse & neglect.

Somewhat amazing that she graduated year 12 & attended university with high grades and succeeded in getting a high paying government job with only drug addiction & promiscuity (hidden from view) being any outward indicator of the nature of her underlying condition.

I cannot lie I was in love and could not leave her to slowly fade into nothing with no help or hope. She also attempted suicide in WA after I returned to NSW which I somehow managed to save her from by insisting her neighbours call the police/ambulance when her phone kept ringing out even though I knew she was home.

Eventually she came and joined me here in NSW and after many doctors & psychologist appointments I was assigned her fulltime carer. Nothing else seemed more appropriate due to her daily attempts & suicidal ideation. (She was eventually diagnosed with BPD, extreme trauma induced PTSD & clinical depression. After now caring for her for 7yrs I would add that she also suffers from mild DID that is only visible if you are with her 24/7)

She did attend the local DBT for several months and while attending she seemed a little better. However as soon as it ended she reverted back to how she had been before. They refused to let her attend the same course twice and now she is only given limited access to public health psychologists who are as we know stretched as it is. She enjoys talking with them but complains they never want to talk about her abuse and neglect and only try to teach her how to suck eggs as she puts it. I have spent hundreds of hours talking with her when she isn't 'acting out' as we call it and over the 7yrs I've cared for her there has been some improvement but the steps are small and often we step back several steps before we try going forward again.

Clearly too much to tell you here but feel free whoever reads this to ask questions.

The main thing I wanted to say was after contacting the mental health unit where we live I begged them to give me some avenue or phone number to call when she was about to go off the rails. I have become quite adept at recognising the signs. We were told repeatedly she shouldn't be given extra medication as she was already on high doses of three different concoctions and that the only thing I could do was call the ambulance if she hurt herself or overdosed or the police if she attacked me, posed a threat to others or went missing. To this day I am dumbstruck at the lack of care in our society for those who suffer so much.

My second reason to reply are somewhat selfish in that I have found the last 7 yrs. incredibly stressful with no assistance whatsoever as the carer. In spite of the many interactions with mental health staff I have never been asked if I am OK, not once. My care consumes most of my time. I do all household chores and other tasks. I am unable to apply any responsibility or pressure on this woman without exacerbating her condition. In order to try and squeeze in any kind of life for myself I now only sleep 4-5 hrs. a night and do what I can outside gardening and fixing mechanical things when she is sleeping or heavily medicated. To compound all this I am renting a shack from someone who it has turned out to be suffering from some form of sociopathy and is an habitual liar. After being lured here with promises of cheap rent, long tenure and peace of mind as soon as we moved in he turned on us & it has never been any of those things. Last weekend he rang with a whole new slew of lies and when I challenged him he called the police who were not amused and then proceeded to issue a no fault 90 days eviction, Her condition is now spiralling out of control once more.

In spite of spending last week trawling the internet I have been unable to find any help what so ever besides one advocacy group I will try on Monday. Hopefully I can prove through my story that the eviction is retaliatory but I am not holding out much hope. At the same time people just say start looking for somewhere else. We rented rural 5kms from pacific highway & 30kms from nearest regional centre to escape the pressure and lure that might hurt my ward at the recommendation of her original decent psychiatrist. She has a horse, chickens and thanks to my nocturnal efforts a beautiful garden which have been the only things that she seems to enjoy. As for looking for other places there are so very few to begin with that are remotely affordable and out of town with access to some small amount of land but the main problem we have encountered is the bias of the real estate agents. We can see the disinterest as soon as I mention carer & mental illness. I now pay in rent the same as a small mortgage and have never been late with the rent but as I said they just aren't interested. So there is my short story to date. Here I sit trying to write everything down for the tribunal in 3mths time having absolutely no idea what is going to happen next. What a profoundly selfish and uncaring society we live.

I wish you all the best with your daughter and hope things have turned out for the better. I will now finish reading this thread to see what happened

Thanks for reading and sorry to butt in with my life story. Being isolated for 7yrs doesn't help :))

Love & peace to all